En”suffer”litis – Marirose tells her autoimmune encephalitis story

I never thought my life would contain a list of clichés: “What doesn’t kill you makes you stronger;” “Act like every day is your last;” or “Attitude is everything.” I never thought those would be mantras ringing through my ears day in and day out. I never thought that 24 years of “memories I would never forget” could be gone in an instant. Maybe we should call it en”suffer”litis.

Beep, Beep, Beep…

My eyes open groggily to find I am in a room attached to a bed with no comprehension of what has been going on. Too confused and too weak to figure it out I notice a nurse barreling by. Suddenly my family and a handsome man (whom I soon find out is my boyfriend of 2 years) come into the room. They are overjoyed to see me.  My siblings enter the room but their heads are beginning to look like tomatoes, and that is when I know that something has happened. I was unable to remember my recent past and those I met during that unrecognizable time. My story below is what I have been able to glean from my loved ones, whose collective memories replaced my own.

In early October of 2014, I began having flu-like symptoms that swiftly turned into seizures. I was taken to Cape Cod Hospital where after days of disbelief from the doctors, along with the inability to stop the seizures I was brought to Massachusetts General Hospital.  After arriving at Mass. General, just a couple of days after the initial symptoms, a roller coaster of events began. I suffered through innumerable seizures that were especially difficult to quell due to an allergic reaction to the medications.  At times my memory faltered and I was unable to recall my recent past and was unable to recognize some loved ones. Despite all the troubling news being thrown at my family they were always hopeful and prayerful. This positive energy resonated with me even though I was completely out of it. When my boyfriend would hold my hand it caused my heart beat to normalize even when I was unconscious and spiraling downhill.  It amazes me how on a subconscious level, I never lost who I was. I was comforted always by my family and my boyfriend. Having positive energy around me truly helped me heal and I know it kept me fighting.

My experience at Mass General was not textbook in any terms; teams at both Mass. General and Brigham and Women’s Hospital tirelessly researched my case in hopes of providing a diagnosis. I was tested for days to find the cause of the seizures. At this point, everyone was preparing for the worst, and the frustration of not knowing the cause became even more unsettling. The doctors decided that I needed to be treated in an aggressive manner with steroids, human plasma, and an experimental chemotherapy. After a period of over two weeks in the ICU it was decided that I needed to be put into a medically induced coma to stop the seizing and give my brain a rest. My parents were informed that if I were to come out of it alive there was a chance that I may not be the person I was before. I could become mentally disabled or have a complete change in personality. I would most likely wake up having lost memories, but at this point keeping me alive was far more important.  Around this time it was decided the likely diagnosis was NORSE (New-Onset Refractory Status Epilepticus) which is categorized as a rare disorder per the National Organization for Rare Disorders and the National Institute of Health. To be clear, my family was informed by my medical team that they only see cases such as this every 10-15 years.

On October 24th, 2014, I was slowly but surely brought out of this coma and, unbelievably, good news was just around the corner. In the following days I was able to chat, piece together events of my life, and come out of it with the same personality! Through tears doctors, nurses, family, and friends were thrilled with the miraculous outcome- my medical team insisted it was the most miraculous recovery they have seen in 25 years. From there I continued to improve, was brought out of the ICU, and my friends were finally able to visit. My recovery is not over, but I am in recovery and that’s what is important. I was discharged from Mass. General, and able to walk out of there on my own, after a total of 1 month with a diagnosis of both NMDA encephalitis and NORSE. Physically, my health was coming along faster than expected, but emotionally I had a ways to go.

When I was released from the hospital and the glaze of medication was beginning to diminish I found the optimistic girl that I had always been diminishing too. I may have been positive on the surface but on the inside I felt betrayed. Why me? I’ve always made the effort to take care of myself and my body. I felt betrayed. I was overcome by guilt that I put all of my loved ones through such pain. I became jealous of all my dear friends who were beginning new chapters in their lives; whereas I couldn’t even stay up a full day without needing a nap. I had a hard time finding the right words when speaking, and even reading was nearly impossible. My life seemed to be regressing and there was little I could do to stop it. I was trying so hard to live in the moment and appreciate all that I was blessed with, but it was difficult. For that I felt ashamed as well. And, the worst part about it was that all of my memories of the last few years were lost. Years filled with teaching abroad, traveling to a dozen different countries, beginning a job with AmeriCorps, and the first moment when I met the love of my life.

But, time began to heal me. I stopped pitying myself and began to see the good in what emerged. I became genuinely happy for all that my friends had accomplished, beginning to believe that my path would soon evolve as well.  It was truly amazing to witness how much love there is in my life. It was incredible to see how many people were there for my family and me during this hard time. I became comfortable with the fact that I lost dear memories and grateful that I could still make new ones.  Memories are stories being retold and I am lucky to have shared them with such great friends and family members who are able to patiently retell them to me again, and again, and sometimes even again.

I may have been put into a coma, but to me it was simply a comma because here I am still alive and healing. My life keeps moving along this winding and bumpy road. I am writing this with the sunset in front of me. I have taken to nature to cure toxic thoughts and to calm my soul. I may not have realized this form of meditation if I had moved away from Cape Cod as was my prior plan. When I witness magical, unfiltered moments, such as a sunset, I thank God for giving me a second chance. This experience has grounded me, and has brought awareness to the fact that there is so much love and kindness in the world. I am back to the positive woman I have always been and I can see how many wonderful things have developed as a result of what many would describe as a devastating event.

I am writing not only to connect and bring light to situations like this to fellow survivors, but also to thank those who have stood by my side. Without your hope, prayers, strength, and above all unconditional love, I may not be writing this now.